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might change dh hospital

35 replies

misdee · 01/05/2007 22:43

average length of time on VAD at harefield 151days

average length of time at papworth 59days

OP posts:
Saggarmakersbottomknocker · 02/05/2007 08:43

It's worth a chat with them at the very least misdee. I know that feels somehow that it's a snub against the team at Harefield. It's not - it's just something you have to do - to know that you explored all the avenues.

LilRedWG · 02/05/2007 08:47

As always you and your family are in my prayers Misdee.

hippipotami · 02/05/2007 19:53

Would Papworth be willing to list him as urgent?

Does Papworth get more hearts for transplant, or the same amount as Harefield?

So sorry you have to face all this.

bewilderbeast · 02/05/2007 20:16

Is there any way, considering the length of time that he's been on the list, for him to be listed at both? Sorry I don't know the politics of it all but it would seem that if you are equidistant between the two that you should be able to be on both lists. It seems unfair that someone should have to wait longer/become sicker/miss out on a transplant because the hospital they are nearest to 'owes' 2 hearts to the transplant service. Would it be possibe to have a sit down meeting with people form both hospitals at once so that you can all discuss together what the best option would be?
Thinking of you as always

foxinsocks · 02/05/2007 20:29

why won't they list him as urgent?

Dottydot · 02/05/2007 20:32

I would definitely phone and have a chat with one of the consultants if you can get hold of one - definitely worth doing - good luck!

PeachyChocolateEClair · 02/05/2007 20:41

Given the situatioon at ahrefield with the 2 owed and not being classed urgent, i wouldseriously be considering moving too Misdee. I know familiarity is important to peter, course it is- i be he ahs friends there- but lately- tehy've not exactly been useful have they?

Kif · 03/05/2007 08:53

Misdee,

I really don't want to speak out of turn - I understand that you guys have breathed and bled every step of the way, so i hesitate to wade in with my advice... but...

You've done the waiting patiently thing - and now you need to get someone with authrity on your side to 'cut through the crap'.

I understand the reluctance to make a fuss; to upset people who've been good to you - I understand you're exhausted and barely hanging on where you are - but that is what management are there for, and that is the mechanism for resolving extreme cases, and cases where the system isn't working.

I hear what you're saying that the medics won't list him as urgent - but they're paid to see the finer detail. People higher up are paid to see the big picture - and the big picture is that it is clearly not right for a father of two to be waiting two years for his transplant.

  1. Write to your MP (or go and see him in the surgery)

  2. Write to each member of the board at the harefield

  3. Turn up at the next board meeting (24th May) and present your case in person. Members of the public are allowed in - see this extract from minutes Dec 2006
    "A member of the public who had been a patient at Harefield Hospital
    for seventeen years following a successful heart transplant operation
    drew the Board?s attention to difficulties he was experiencing as a
    consequence of the closure of the Dental Department over Christmas
    and the New Year. [it then goes on - but the point is they routinely hear supplicants]"

  4. Write to the minister for health

Make sure that later no one can say to you 'oh, we're sorry, we didn't know'.

Your message in each case that you're grateful for what's been done, you appreciate the pressure the medics are under, but you're really desperate now - and you've been waiting for a really long time.

Again, I'm sorry if I'm speaking out of turn - just wanted to give you my outside perspective.

noddyholder · 03/05/2007 10:32

Have you asked them what constitutes 'urgent' in their books?I am and for you both it is an awful time and you have been waiting what seems like forever.

noddyholder · 03/05/2007 10:33

BTW misdee I switched hospitals half way through treatment when I moved to Brighton ans was terrified as the familiarity of london was a comfort but it was a brilliant move and things in Brighton were a lot better for me

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